Thursday, November 16, 2006

The First Four Weeks - Part 2

The staff at the RMCH are all kindness. Too many people to mention or remember.

But I would like to mention a few. First our consultant, J. He's marvellous. Takes his time to talk to you, explain the illness, the treatment etc. I quite quickly went and bought a couple of medical textbooks on haematology (blood) and oncology (cancers) so I could ask him sensible questions. Obviously, this gave rise to more questions as I tried to get my head around neutrophils, basophils, hematocrit etc etc and their significance in test results. J. takes his time to explain to you, at your level and without being in any way condescending. He really shows sympathy to what you and your child are going through. He has continued to answer my questions from afar. Thanks J. for your patience and kindness.

Secondly, our hospital social worker, T. Again >200% sympathetic. Bits of money here and there which she has arranged have really helped out. The social services at the hospital are contracted out to a NGO called Clic Sergeant (see link on right). They automatically give each new patient ₤200. Since she has found us bits of financial support from various sources. Always ready to listen. And helped out a lot getting letters written to support our immigration/visa issues. Thanks T.

The nursing staff are wonderful. So clearly love kids. Special thanks to H. (hope the pregnancy went well!) and E. You showed special kindness to us. You are allocated to a couple of nurses who meant to give you special attention, kind of mentoring you. Not sure this works too well given they work shifts, take leave etc. Anyway, all the nursing staff are great.

Other parents – we all tend to be a bit wrapped up in our own problems. However, we made special friends with A. and her daughter H. (who I mentioned briefly earlier). H. was admitted about a week or so before us and just before her 16th birthday. Whilst Kezia's treatment has so far all gone according to plan, H. (and obviously her family) has been to hell and back. Every side-effect in the book and more. Medication-induced diabetes, blood clots in her legs, mucosis that has made her saliva green etc etc. Most recently contracted ankle tendons that have required her lower leg to be set in plaster. All this in addition to “normal” side-effects such as tingling feet, hair-loss and mood-swings. You are very very brave! A., you've been a wonderful support – just talking and sharing feelings has helped me so much.

Thanks to all of you! I will never ever hear the National Health Service be knocked again!

Each day would fly by. Bathing Kezia, breakfast, doctors' rounds, meeting J., meeting T., other specialists, taking temperature and blood pressure, treatments (pills, drips, injections), transfusions (blood and platelets), paperwork, interpreting for Nanda, lunch and dinner, laundry, visits from my brother and sister-in-law, phonecalls to/from family, playing with Kezia. And, above all, learning about leukaemia. A steep and rapid learning curve!

Parents are given blood test results but don't have an automatic right to see their child's entire clinical file. I summoned up the courage to ask about this, not wanting to make anyone uncomfortable that I had any doubt whatsoever about the excellence of the treatment Kezia was receiving. After asking the ward sister, I headed off to the Patient Advice and Liaison Service (I think that's what they call it). Apparently, if you want to see your child's file, you have to write a letter to hospital management. You will the be granted permission to see the file under supervision. You can request photocopies but pay for them. Later, I talked to J. about this and he said he'd willingly show me the file if I wanted. My confidence in him, his patience in explaining everything, led me to decide I really didn't need to see it right now.

At first we were allowed to take Kezia out in the hospital grounds. There's a nice garden with a small aviary with parakeets and budgerigars (donated and built in memory of a past African-origin patient) so we'd take Kezia down there. In the third week we were allowed to take Kezia out to the local park where we'd play on the swings and slide.

Kezia has never had a pushchair as back home the almost total lack of pavements and the numerous potholes make them pretty impractical. Well, Kezia has decided she ain't going to start now when it's much more warm and comfortable to be carried in the traditional African way on mum's back! Even after my sister-in-law brought her a beautiful bald black doll with her own pushchair! Kezia was quite happy pushing Baby around but herself – not likely. We managed it a couple of times but she was definitely not keen. The pushchair we have since bought remains the preserve of Kezia's menagerie of stuffed toys! In fact, whenever Kezia is upset, going on mum's back is a sure way to calm her down even to the point of sleep. The hospital staff were amazed.

See this link about African women and pushchairs

For some reason Blogger isn't allowing me to post photos today - will add some to this post when this is resolved.

Part 3 to follow

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